Monday, 23 November 2015

"Out of Sight, Out of Mind" Campaign

96% of people don't believe that society treats physical and mental health equally.

In October 2015 I was diagnosed as being on the Autistic Spectrum. I'm nearly 50 and my diagnosis amongst other things was an opportunity to reflect over many events in my life and see them from a different perspective.

When I explained my diagnosis to people, the reactions I got were varied and it made me wonder not for the first time that if I had told them I'd been diagnosed with a physical condition, whether they would have reacted in the same way.

However some people were very kind and people online were very supportive. Some people called me brave, which they meant kindly but as I have an over-thinking brain, I wondered if my choice carried with it an element of risk.

44% of people have decided not to share their "invisible" condition with others.

There is definitely still a high level of stigma that walks hand in hand with anything to do with mental health and "invisible" conditions like autism, depression, anxiety and bi-polar disorder.

In the case of MS which is a physical condition, there isn't always a tangible sign of its presence, so symptoms can be misconstrued. I know when my mum was first diagnosed with dementia, she feared the stigma that revealing her condition might bring.

Culturally we need to see a sea change in attitudes so that for mum and me, my daughters and millions of others like us, we shouldn't be afraid of being who we are.

52% of people have experienced social exclusion as a result of revealing their "invisible" condition.

I decided that I needed to address this issue. Irrespective of anyone who believes that labels are unhelpful and reductive, to me diagnosis gave me the answer to the question I've asked myself all my life, "why am I different?"

The "Out of Sight, Out of Mind" campaign seeks to highlight the lack of parity of public attitudes between physical and mental health by highlighting that invisible or hidden conditions, need to be treated in exactly the same way as any other health condition.

To illustrate this I conducted a survey which was completed by 519 people. The results are detailed below with some case studies. The fact that two of the case study participants needed to remain anonymous is further evidence of how far we as a society need to go in understanding that difference is normal.

88% of people believe that everybody shares responsibility for ensuring equal treatment of people with an "invisible" condition.

Case Study #1. Gavin Wheeler is a mechanical engineer. His five year old daughter Seren has high functioning autism.

Some of my friends don't understand why I don't go out much anymore. Seren doesn't like being left with a babysitter and gets very distressed, so we just don't do it.

We also get a few funny looks when we go out for dinner. Neither of our children are great at waiting for dinner, so we always have colouring books or toy trains to keep them entertained. We tend to go to places with a quick turnaround, and get the bill as soon as the food arrives, which people don't seem to understand, but I think eating out in general would be better if restaurants catered for children better and kept waiting to a minimum. At the local wildlife park they have a buffet type service, where you pay before you eat, and it's their favourite place to eat.

62% of people have experienced negative reactions at school, college or work because their condition is "invisible".

Case study #2. Bruce Lawson is an open standards advocate for a web browser company. He lives in Birmingham. He has multiple sclerosis.

"Multiple sclerosis is a neurological disease in which the insulating covers of nerve cells in the brain and spinal cord are damaged. Some people are much worse off than I am, and have visible symptoms (wheelchairs, are bed-ridden etc). Mine is — touch wood — relatively mild. When tired, stressed, or fighting a cold (for example), I can be clumsy, because my fine motor control goes stupid. I can also slur my words or trip over air molecules, which can lead people to think I'm drunk. This is made worse by the fact that about 30% of people with MS experience difficulty swallowing, which for me means that food sometimes comes back up, requiring a hasty exit to the bathroom.

My job, however, involves lots of international travel, public speaking and networking meals. Because of stressful and tiring nature of the work, and the symptoms I get, I found it easier to be be open about my disability, so that if any clumsiness, speech problems or bathroom rushes occur, people will know why. 

Sometimes people ask questions about it, which I'm happy to answer. No-one treats me with kid gloves - which I'd hate. Perhaps the green mohawk and kickboxing gives a tougher impression than I merit (I'm a big softie folk music fan).

I'm very lucky that in the 16 years since being diagnosed, my different bosses in various organisations have been understanding, ensuring that I get the rest I need. 

A bonus to being open on social media is that I occasionally get messages from people who've been recently diagnosed (always a tumultuous and emotional time) who tell me that reading my statuses from various countries gives them encouragement: MS doesn't inevitably lead to wheelchairs, paralysis and incontinence.

And, nowadays, when I'm actually drunk, people don't give me a hard time, as they think it's the MS. Result!"

71% of people have experienced a negative response when their "invisible" condition is revealed.

Case Study #3. Anonymous contributor who has depression and ADD.

"I think one of the worst aspects of having an invisible condition is that people who don’t know, will say awful things or make jokes about people with mental illnesses while I’m standing right there. I feel alienated and pressured to speak up. It’s not a good way to start a conversation about it. It usually ends up being productive conversation but I’d prefer not to have to tell people about myself in that way.

Another issue is that people forget that I have depression. I’m often told I ‘seem fine’ so they forget. When I have a new bout of it, I have to remind some people, which often ends up being emotionally exhausting for everyone. 

Other people, while well-meaning, think they can help by pointing out all the things I should be grateful for or reminding me of all the people who love me. There are others that tell me all about the treatments and cures available.  It’s hurtful when that happens because I’m aware of these things. What they’re unaware of is that treatments aren’t as magical as they’d like to think and ‘cure’ is a relative term. Being reminded of my situation makes me feel much worse. It’d be more helpful if they’d ask me what I need instead of assuming." 

43% of people, if diagnosed with an "invisible"condition tomorrow, would fear for their job security.

Case study #4. Anonymous contributor who has depression and anxiety.

"When I’m asked (often in job interviews) why I’m a contractor I recite the same line, with utter conviction to the point where even I start to believe it, each time: “I once read about someone only a few years older than me who was a comms director while I was still junior. He gained his experience through contracting so that’s what I decided to do.”

But the truth is that my anxiety and depression prevent me from getting a permanent role. Actually, that’s wrong – my fear of talking about it and my experience of other people’s reactions to it prevent me from applying for permanent roles. I’m the sort of person who has needed a week off sobbing by day, having nightmares by night. If I’m on a day rate there’s a lot more flexibility about time off and if relationships get too difficult with a particular team member.
I once worked with a woman who declared to the office that “Tourette’s, ME and bi-polar disorder don’t exist, they’re just an excuse for bad behaviour”  I simply had to leave and couldn’t possibly tell her that I suffer from depression because in her eyes it’s probably just an excuse for laziness. I can simply leave with no questions being asked and no eyebrows raised when my next employer sees that I was only in that role for eight months.

I admire people who do talk about their hidden conditions – they are paving the way, ensuring that future generations have a smoother path with fewer obstacles to trip them up. I’d love to be one of those people but I’m not. I can’t afford to be." 

97% of people said that mental health is as important as physical health

Case Study #5. Anonymous contributor who has autism and anxiety.

"My anxiety can affect my everyday life; sometimes I’ll wake up in the morning, unable to get out of bed, frozen in place because facing the day ahead is just too much of a challenge for me to cope with. When I was at my worst, I had to come out of school for almost two years due to how quick I would be to panic, or burst into tears at just the very idea of leaving the house in general. 

I am better now. But I have my off days. And if one of these days happens to occur when I have to go to college, would I let my teacher’s know I’m absent because of that? To be honest, no, I wouldn’t. 

I have such a fear of being judged that I usually come up with some other excuse; a sudden migraine, or bad stomach problems normally.  Even if I think they’d understand on the surface, a part of me is worried, due to the stigma I’ve faced in earlier life, that they’d hear “too anxious to come in” as “wants to skive off of doing work”.

On the plus side though, I’m taking medication for my anxiety now; the side effects cause stomach problems, making me miss more college either way.
How ironic"


I'm very grateful to the case study participants for sharing their experiences with me.
Many thanks to everyone who shared my survey online and I'm hugely grateful to the 519 people who took the time to complete the survey.

85% of survey participants have, or support someone, with an "invisible" condition.

80% of survey participants know someone with an "invisible" condition.

    "Out of sight, out of mind" Campaign - Difference is normal